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Thanks Linda7NJ and sweetmom! we are doing very well with some amazing doctors. sweetmom, i am glad to hear your child is doing better and agree with you in wondering if that could be part of the problem.

My child saw Dr Flores several times before he referred us to a doctor and hospital in another state for a procedure not performed at Boston Children's. He is an impressive physician who has authored or co-authored numerous articles on a variety of GI topics. Simply acting as co-author on a...

I do not believe so. I am not a doctor - just a mother of a chronically ill child who is very familiar with motility disorders (among others), Boston Children's Hospital, and Dr Flores' protocols. Over use of pain medication - actually any use of pain medication - can cause chronic...

Yes there are patients that need multiple medical procedures. However, speaking as a parent of a child who has needed multiple innovative medical procedures at several different hospitals due to a rare medical condition, I can tell you that it can be seen as a red warning flag of possible...

Thank you for posting that link. I have read that article and I can see where someone might interpret the quote you included as meaning that the family "showed reporters her medical records." But actually, that is not what that says. What it says is that the family provided "proof that every...

Thank you for your insight and expertise. Your explanation is very similar to what my child's doctors have explained in the past. In our case, treatment was begun based on the working diagnosis as it was considered safe and reasonable to do so. My understanding is that the mainstay of...

Exactly. That was going to be my point in the improbable event that a reference to an independent reporter or commentator stating "i have reviewed all of Justina's medical records as provided to me by the family" were to surface. Not only have I never seen or heard such as statement, it would...

Neither of the links you provided prove the December 2012 date you have indicated for the skating video. No one is disputing that Justina was able to skate at some point in the past. The family has certainly presented this video as some sort of proof that she could skate just weeks prior to...

From your perspective, perhaps you could explain the meaning of the term "working diagnosis". This and some more well researched articles use this modifier, but I don't think most of the general public understands what this means. There seems to be a lot of assumptions on the part of the...

Do you have a source for this claim? Something besides a family member?

Thanks K_Z. I should have explicitly stated that in the first post of this information. I should not have assumed that it was clearly a partial document. The reason I linked this is because so much of the information contained in it - as provided by the mother - directly contradicts common...

That is a standard format for a clinic note. It is not intended to be read by the general public, it is intended for the medical record. Notes do not always specifically state that the physician examined the patient as that is expected to be understood by the person reading the record. The...

I agree that she was able to ice skate at some point in the past. It is not clear from the few photographs and short video provided by the family exactly when that ice show (not competition) took place. I do not believe that there is a date on the images. It is the common practice at BOTH...

I found the above BCH Clinic note interesting because it provides information that disputes several firmly held beliefs expressed by some members of the public. Belief: BCH doctors changed Justina's diagnosis based on minutes (hours) long evaluation by junior or student doctors. Fact: Dr...

I read over the previous posts and, although I might have missed it, I was surprised that I did not see a mention of or link to the clinic note from the director of the Metabolism Program at Boston Children's (Korson's contemporary). This was posted on Beau Berman's FoxCT Facebook on December...

The parents distributed a copy of the initial care plan that they were presented with in February 2013. That initial plan did indicate that many of her medications would be stopped including the one you mentioned. It also listed a great deal of behavioral and psychological intervention...

I agree that this has not been money well spent. It would have been far more cost effective if the parents had obtained appropriate medical care for their child without DCF involvement and it would have been less expensive for DCF if the parents had not blocked the child's transfer to a less...

DCF is certainly government funded and in some cases, although certainly not all, parents do pay child support. In this case, there is no reason to believe that such an order has been levied against the Pelletiers. They have been highly vocal about every perceived slight in this case. Can...

Things are not as clear as you would like to believe. There obviously is evidence that Justina Pelletier has been medically abused or neglected by her parents. With no evidence, they would not have been reported multiple times by medical providers to DCF. With no evidence, the judge would not...